Tag: 19Q4

Well first, some housekeeping. It’s been more than a while, I know. I feel like an idiot bear emerging from hibernation 3 months late and everyone’s like Dude, what have you even been doing? Getting crushed, that’s what.

A health update for 2019: mine is still mostly missing. Hate it when that happens! 2019 has continued to be a slow-rolling, sick train, punctuated by outings to every type of doctor, assuming I don’t call in sick to the appointment. Calling in sick to the doctor; what an absurd reality.

This elongated crash state feels like some kind of warped dream when I reflect on it. I would blame this on the repetitiveness of days that can start to feel indistinguishable from stagnancy. It feels like…

DayAfter day…After Day…After Day…After Day…After Day OK I think you get it…

That last photo was on my way home from a cystoscopy, which they put you under for, thank Gawd. But I was a little…out of it. The procedure is supposed to help the interstitial cystitis, but low and behold, I still find myself having to pee like a racehorse a LOT, soooo, maybe it’s just taking a while to work. Here’s hoping.

As always the creative challenge of life with chronic illness continues. What a strange conundrum, living with a body that doesn’t know how to function as a body. So, what to do?

Reading Murikami’s 19Q4 followed by Killing Commendatore, which I’m sad to have just finished, have kept my imagination wild and busy, and I wish I could thank the guy personally for what joy he’s brought into my life. Reading Murikami’s stories doesn’t just give you ideas to reflect on–it’s a really involved experience just reading one of his books. It’s very involved somehow. As though a real exchange were taking place, but I don’t know how that is possible.

Before walking home from my parents some nights, I think of the characters inside the pages, waiting on me to get into bed and open the book so they can get on finding their way. It’s by far the deepest I’ve fallen into a body of work, fiction anyway, and I have absolutely no idea how he does it. I’m just glad to get lost in something so positive. It’s too easy to fall into counterproductive thoughts or habits when you’re so physically limited. So as always, it takes a good chunk of mental exertion to stay on the right side of the experience and to be cautious in how I tell myself this is all unfolding.

***

For no good reason at all, I get into bed at night and truly believe I’ll be improved tomorrow. I imagine all the things I’ll do. All the catching up and even what clothes I’ll wear while I’m busy bustling around the house. I can see myself cleaning out closets and on the phone, checking things off my list–Monty following me, room to room. I can envision it all, and drifting off, I always expect that tomorrow will be better. And yet for roughly 120 tomorrows, I’ve awoken to mostly a repeat of the day before. Oh real great Universe!

Now and then I receive some improved feeling that I’m finally rounding the corner of this thing and the worst is over. Perfect! Then either hours later or two days later, I’m paying a high price for what feel like very petty offenses. The invisible line of this thing– it’s the most frustrating part. It makes any kind of management of it feel impossible.

It’s like driving through a backwoods town in the middle of the night without any headlights on. The “warning signals” of this illness are meek and inconsistent. You have to pay such careful attention to what can be a trigger, but even still, it seems sometimes you crash for no reason, or have a full month of migraines for no good reason. It can be hard to see straight at all and you wish you could just turn your danged headlights on!

I am surprised this crash has endured so long. But maybe it’s silly to be surprised. It’s certainly worthless to take it personally, and yet it’s easy to feel that way. Waking up to the same fight day after day can easily fuel the ego, which will try to convince you of just that. That it’s personal and unfair, and going down that route doesn’t do one bit of good. I have to keep things straightened out in my mind and brush off ideas that are useless and untrue. Maybe the truth is simpler more often than it’s complex. As Tolle says, “It’s neutral. It always is as it as. Nothing more.”

The truth here is, this is the nature of the illness I have. It waxes and wanes, so there’s no reason to be caught off guard or believe I’ll never improve. The fact is this is a disease behaving like a disease. The physical toll and reality are hard enough, no sense getting hit with a second arrow, right? The second arrow is feeling bad about the first arrow. The first arrow is being chronically sick in the first place. One arrow only, please and thanks.

Defaulting back to simple truths is how I’ve been trying to handle all of this, psychologically, but of course it’s not always so easy. Actually it’s never really easy, but it is meaningful when I can find joy and purpose despite it. I’m happy to at least know what ideas and thoughts aren’t helpful to the situation and to vanquish them before they have a chance to take hold and grow. I’m happy to have the counsel and ear of my mom, who hears me out and comforts me when the struggle feels too big, without me barely having to say a word. Talk about gifts you cannot buy.

Despite knowing certain truths consciously, I find myself always questioning myself. I lay in bed thinking This is obnoxious. There must be something I can do. But some days really are just bed-to-bathroom days, and I have to be honest about what I’m capable of. My life feels split in two sometimes, because so much of my communication with people is through text. So I’ll be lying in bed feeling deadly, but texting smiling emoji’s with plenty of exclamation points to show my love and enthusiasm for other people, and I think how strange it is, the dichotomy of the life I project sometimes and the one I’m actually living. I imagine maybe everybody struggles with that, in their own way. We all contain multitudes.

The timing of all this is crappy, of course. There’s never a good time for a crash, I suppose, like there’s never a good time to break up. But there are worse times for each. Being this crashed in the middle of trying to pack and prepare for a move is like the timing of getting dumped on your birthday. Oh well. Even after birthday breakups, people recover. I think.

***

The story!

Last week I was tired of waking up and feeling like I was on my deathbed, naturally. So, I figured there had to be some good meditations on waking up and getting your body psyched for the day. Right now, waking up feels like I went to sleep by getting hit in the head hard with a frying pan, like the characters in cartoons. I’ve also been very weak in the mornings and getting out of bed has been really challenging.

So, I find a mediation easily on youtube, geared toward waking up and energizing the body. It’s 15 minutes. Great. I press play. 25 minutes later, I wake up to a commercial playing and realize the meditation meant to wake me up peacefully sent me back to sleep. Swing and a miss! So, I try another.

This one is also 15 minutes and looks promising. Energizing! it claims. So, I make it through the first 13 minutes. I’m having a hard time focusing because I’m really weak, I’m fighting the bone-crushing fatigue and my migraine is back. But on with the show. The woman guiding the meditation says to repeat the phrases she’s about to say out loud. OK… “Repeat after me” says the slow, assertive voice emitting from my phone. “I feel strong and powerful.” I can’t help but let a smile melt across my face. I say it anyway. “I feel strong and powerful!” “I feel energized and ready to take on the day.” My smile grows bigger. “I feel energized and ready to take on the day.” Now I can’t help but actually laugh. “My body is healthy and my state of mind is focused.” Ummmm…

At this point I am half repeating and half laughing, because I don’t feel these things the woman is saying, like at all. But the fact that it’s making me laugh feels like a success all on its own. A few minutes later, I fall back asleep. BUT, it’ a very peaceful sleep. So maybe it wasn’t a total loss. I imagine once asleep I was “energized and ready to take on the dream.” ;)

Maybe when I’m a little stronger it will work. I don’t think it will be long now, yet I still have no idea why I think that. Owell, it feels good to believe it anyway.